Are caregiving responsibilities associated with non-attendance at breast screening?

Background: Previous research showed that deprived individuals are less likely to attend breast screening and those providing intense amounts of informal care tend to be more deprived than non-caregivers. The aim of this study was to examine the relationship between informal caregiving and uptake of breast screening and to determine if socio-economic gradients in screening attendance were explained by caregiving responsibilities.

The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.

Caregiving and its impact on families of the terminally ill

Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101 (67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipient's life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and c. ulturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Caregiving for the terminally ill:at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales.

BACKGROUND:

Many studies have suggested that caregiving has a detrimental impact on health. However, these conclusions are challenged by research which finds evidence of a comparative survivorship advantage, as well as work which controls for group differences in the demand for care.

METHODS:

We use a large record linkage study of England and Wales to investigate the mortality risks of carers identified in the 2001 Census. The analysis focuses on individuals aged 35-74 living with others in private households and a distinction is made between those providing 1-19 and 20 or more hours of care per week. Logit models identify differences in carers' health at baseline and postcensal survival is analysed using Cox proportional hazards models.

RESULTS:

12.2% of study members reported providing 1-19 h of care and 5.4% reported providing 20 or more hours. While carers were significantly more likely to report poorer health at baseline, survival analyses suggested that they were at a significantly lower risk of dying. This comparative advantage also held when the analyses were restricted to individuals living with at least one person with poor health.

CONCLUSIONS:

The comparative mortality advantage revealed in this analysis challenges common characterisations of carers' health and draws attention to important differences in the way carers are defined in existing analyses. The survival results are consistent with work using similar data for Northern Ireland. However, the study also affords more uniform conclusions about carers' baseline health and this provides grounds for questioning existing hypotheses about the reasons for this advantage.

Bereavement After Informal Caregiving: Assessing Mental Health Burden Using Linked Population Data

Methods. We linked prescription records for antidepressant and anxiolytic drugs to characteristics and life-event data of members of the Northern Ireland Longitudinal Study (n = 317 264). Using a case-control design, we fitted logistic regression models, stratified by age, to model relative likelihood of mental health problems, using the proxy measures of mental health–related prescription.

Results. Both caregivers and bereaved individuals were estimated to be at between 20% and 50% greater risk for mental health problems than noncaregivers in similar circumstances (for bereaved working-age caregivers, odds ratio = 1.41; 95% confidence interval = 1.27, 1.56). For older people, there was no evidence of additional risk to bereaved caregivers, though there was for working-age people. Older people appeared to recover more quickly from caregiver bereavement.

Caregiving reduces mortality risk for most caregivers: a census-based record linkage study

Importance Countries with advanced welfare systems are increasingly relying on the input of informal caregivers and there are growing concerns for their mental and physical wellbeing. However, the evidence about the relationship between caregiving and mortality risk is less clear.

Methods A census-based record linkage study with mortality follow-up of thirty-three months. A total of 1,122,779 individuals including 183,842 caregivers, of whom 28.2% (51,927) were providing fifty or more hours caregiving per week.

Results Over thirty-three months of follow-up a total of 29,335 deaths occurred, with 2,443 of these to caregivers. Mortality risk for caregivers was lower than for non-caregivers (HR= 0.72: 95%CI=0.69, 0.75 in the fully adjusted model), and the lower risk was evident even for those providing fifty or more hours of caregiving per week (adjusted Hazard Ratio=0.77: 95%CI=0.71, 0.83 and 0.76: 95%CI=0.69, 0.83 for men and women respectively). There was no evidence that this relationship varied by either age or marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.


Keywords: caregiving, carers, mortality, longitudinal follow-up.
marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.

The Positives of Caregiving: Mothers’ Experiences Caregiving for a Child With Autism

Most research in the field of autism focuses on the medical and psychological characteristics of the disability. Research that focuses on caregiving emphasizes the stresses and pathological features associated with having a child with autism. As such, the more positive aspects of caregiving have been left in abeyance, portraying caregiving and autism as characterized by only negative experiences, prognoses, and outcomes. Based on mothers’ reflections, this article reports on some of the positives of caregiving. The findings provide a glimpse into a seldom studied side of caregiving—events and experiences appraised by mothers in a positive and sometimes joyous light—and the impact they have on mothers’ experiences. Furthermore, practical implications for social service professionals and families are discussed.